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Traumatic Brain Injury Is ...

Comments [237]

Brainline

Brain Injury Is...

TBI defined by the people who are living with it ...

BrainLine asked our online community to share their personal definitions of traumatic brain injury, and the list below captures some of the many responses so generously provided by people with TBI.

Every individual’s experience with traumatic brain injury is unique, but there are many common symptoms and emotions. Anger, fear, sadness, and anxiety may be accompanied by difficulties with memory, pain, and the challenges of maintaining relationships.

We encourage you to add your own definitions in the comments section below, and to join the BrainLine community on Facebook, Twitter, YouTube, and Pinterest.

A puzzle … all the pieces are there but in the wrong order.
—Barbara

When the cursor disappears from your mental computer screen.
—Dave

Brain fog, confusion, difficulty learning new things, being able to be “high-functioning” but being very slow at it.
—Mary

An invisible thief.
—Lisa

Devastating. Exhausting. Widely misunderstood.
—Jules

Scary. I look the same but I feel like someone else.
—Ann-Michel

MIA or AWOL … Missing in Action or Away Without Leaving!
—Trish

An invisible memory-taker, mood-changer, life-changer!
—Meg

Like being under a constant waterfall and I’m just trying to catch my breath and not drown!
—Angie

Thinking with speed bumps.
—John

Like an earthquake in my brain that knocked down bridges and damaged highways and knocked out some —but not all —lines of communication. Some of these things get rebuilt more quickly than others, and some are easily re-damaged.
—Alison

Like having everything in your life suspended in Jell-O, and just when you reach out for something, the Jell-O gets blended.
—Indy

A family affair … when a family member has one, it affects everyone.
—Stephanie

A constant struggle for the rest of your life … you know how you used to be and you want your life back … but it won't happen … it's like living in thick fog.
—Christy

Scrambled egg between my ears.
—Graham

The absolute hardest thing that you can imagine going through!! Unbelievably frustrating and isolating.
—Chelsea

Learning to live in a brain that sometimes feels like it belongs to a stranger.
—Sharon

Forgetfulness and a total personality change.
—Dana

Scary. Frustrating. Annoying. Funny at times … sometimes I feel rather than get frustrated about one of my deficits. It’s better just to laugh about it.
—Sonia

Limiting, difficult, having to “relearn” things you thought you already knew.
—Justin

Unpredictable and extremely misunderstood.
—Ronda

Like having the flu all day, every day … for the rest of your life.
—Nathalie

Trying to catch clouds in a windstorm.
—Mary

Comments [237]

Being dropped into the wrong body

Nov 24th, 2016 6:08pm

like trying to drive a car without a steering wheel

Oct 15th, 2016 12:00am

like a puppeteer controlling you, and you are aware of it happening but unable to tell them to stop.

Oct 14th, 2016 11:53pm

...that you could be having an AWESOME day and that tomorrow ... you already know that you won't remember it ...

Oct 5th, 2016 10:08pm

I'm a spouse of a TBI husband. Grateful for the insight you have given me. My heart aches for all of you. This will help me be more aware of why he acts the way he does at times and I will be more patient knowing he isn't meaning to do those things he would of never done before. Blessings to you all and in time things to be better. ❤

Sep 19th, 2016 1:01pm

You know all the answers to the questions, but they are just out of reach and when you try to stretch to grab them it feels like your brain is being wrung out like a towel.

Sep 17th, 2016 6:42pm

I feel like I lost my son the night he got beaten up. The young man he is now is aggressive and violent. I cry everyday for him. Its ruined our lives

Aug 21st, 2016 1:10pm

like having the same breakfast every morning for the rest of your life.  It's always the one specific thing you don't like!  ~  Jennifer (Jeni) Stokley

Aug 13th, 2016 12:58pm

This has been my scenario since I was stricken with Hydrocephalus, at five months of age and little was known then, I am 55 years of age now. I have struggled with the detriment of with little, to any support system at all,ever !!!!

Jul 3rd, 2016 1:16pm

Having this injury no one understands, not even yourself is frustrating because you look normal and no one understands what is going on inside!  You can't see a heart attack victim, why can't people realize this is the same (not being able to see) and you would change it in a second if you could

Jun 12th, 2016 12:52am

I spent many years pretending / no convincing myself that I do not have a TBI but after reading all the definitions of how this affect people it has made me realize that   not only do I actually do have a TBI but I am actually very lucky as my TBI has never allowed me to stop doing whatever I wanted to. I understand over the years, it is 13 years since I suffered a fractured skull due to being hit by a car, I have adapted my life to not be fearful of things. If you want to do something then do it, don't let people tell you you can't cos ......... Surviving makes you brave, sometime's a little inappropriate, but lets face it even people without a brain injury can be in appropriate occasionally. So it's the bravery aspect that needs focusing on not the poor me. And that's my take on TBI :-)

May 26th, 2016 7:47pm

The police hurt me and violated my rights. I can't think. That is what I wanted to convey to an attorney following an abrupt and violent arrest in my own home in a premeditated arrest. It is called rotational acceleration TBI. I also was in medical shock and traumatized, and my right wrist was swollen from handcuffs. I was confused by everyone talking at me and not letting me talk. It felt like I was under general anesthesia that didn't lift. I was the victim of a setup and told the FBI takes people like you out of the country to Guam. The police state in orange county, California is real. I was a paralegal, and haven't worked in 36 months. The attorneys were all insane, and had the parties confused. Can you imagine being brain damaged, and talking to an attorney who doesn't know who the defendant is? That is what was happening to me. My brain short-circuited, the wires to my brain were clipped, and every time I raised my voice, I had an epileptic brain seizure. I processed information at 2%. I also disassociated from the trauma, on top of TBI. I told my friend I am having trouble de-fragging my brain, a computer term where all the data is scattered on the computer disk, and one performs disk cleanup to defrag, line up the data, so I can finish disbarring 3 attorneys. Complete insanity is what I experienced, from everyone. And no one can relate to what I'm saying. I was the most fragile,delicate person on earth and no one was listening, because I couldn't assert myself. I was reduced to a 5 year old at the mercy of others, trusting they would help me. Rodney King, also a victim of police brutality, also had brain damage. When he said, 'Can't we all just get along', that was indicia of brain damage, an innocent-like child's response, because executive functioning was disrupted. It destroyed my life, and I was amnesiatic for 2 years. My heart aches for everyone who has posted here, because I know no one wants to hear about it. -ANNE

May 22nd, 2016 3:54pm

Like demons are controlling my emotions on overdrive...they have driven away my whole family and are draining the love of my life, who is all i have left, but will probably leave because he can't handle this over and over and over.  I can rationalize at times and see how i ruin everything, but then i get so easily overwhelmed and flooded with uncontrollable emotion and anxiety it ruins the things most precious to me.  I come across as a liar and disrespectful when it could not be further from the truth.  I cannot drop an arguement, I am not understood.  I do not even understand myself.  I miss the old me.  I feel like an abandoned child that thrown in a pit i can't get out of.  I am frustrated, lost lonely, forgetful, hopeless.  I can't cope.  Bad things keep happening.  Everyday i am walking on eggshells because i am worried how my anxiety will affect others and ruin me and what i will mess up.  My spirit is broken and I am breaking my spouses...the harder i try, the more i fail.  I am like the boy who cries wolf to everyone, except they can't see the problem which is much larger than a wolf.  Dr's and specialists just listen and send me on my way.  I am afraid after 5 years that i will one day lose everything and be homeless.  My heart jumps and skips beats.  I feel i am dying a slow and painful death and people think i am crazy.  I am on a merry go round that i can't get off of that should be called a hell go round as everyone else enjoys life and can deal with adversity.  I want to be there so badly but the more i try the more i fail and hurt others without wanting to.  Breathing is an effort.  Ceasing to exist seems like the only way to peace.  I have 2 little pugs who are always there for me, even they can tell i am a mess, but they still stand by me.  Life is passing by, I am so embarrassed and make the same mistakes over and over, so i am not taken seriously anymore.  I was in a bad car crash and roll over several times 5 years ago.  I look "normal" but I am not.  I feel i am overlooked in the medical system, falling through the cracks.  I used to be a nurse, a snow boarder, a surfer, a traveler, played hockey, volleyball, wake boarder, full of life with goals, hopes, and dreams...now life is like a glass timer with sand dropping grain by grain...each grain represents the anticipation of the constant struggle,heart ache, battle and frustration of failing when i am trying harder than ever to move forward.  Eventually the sand runs out, just like those closest to me have slipped away....I am down to my last grain of sand...my spouse...my everything...my life line, but I am hurting him and it is not fair.  I love him deeply but cant seem to get things right.  I am shouting but no one can hear any more...it is like being stuck in a horror movie that will not end.  I am scared, lonely, ashamed, and embarrassed.  I wish i could snap out of it.  I will not live without my spouse, but it seems he has had it with living with me.  I have tried to reach out to God in total desperation, but do not feel a connection of any sort.  I have gone on and on and on and could keep going, but if anyone has read this far, i think i have made my point.  Many comments have here have made me cry.  So sorry to all those struggling.  Wish i had words of wisdom

May 7th, 2016 2:01pm

Like I have pop rocks going off in my head that I cant control. I relearn birthdays I once knew and am thankful for life, God and my family and that my loved ones are patient and kind.

Apr 29th, 2016 1:03am

Thank you all for your comments.  I have been given confirmation and some sense of relief.  What I will take with me is "Discover your new self".  It is who I am now.  Not less just different. I am not alone.

Apr 21st, 2016 4:24pm

WHO am I? WHERE am I? WHAT am I?

Apr 20th, 2016 5:28pm

My traumatic brain injury is a jenga tower, i keep building myself up just to fall down to where i started again. I have dealt with it my whole life, but even the "normal" days bring anxiety and fear, every other day brings shame and sadness from lack of normal friendships for 13 years, in middle school the other kids noticed i was "different" so i was an outcast, and still feel that way. The epilepsy that started a few years back makes things more stressful. Lack of vision in my right eye from the injury haunts me daily.

Apr 19th, 2016 11:48pm

Alienation from the very people you love the most.   Wishing they understood the very things that are debilitating to you and feeling as if they don't know what your problem is so they all just go away, only every once in a while reach out to you to find out what you are up to and why you haven't risen to the person you once were again leaving you isolated alone homeless in many instances with no stability no one to understand just why you can't get it together.  Why?  They ask themselves?  If I were you I would have..... or if it were me I would.......  She is so hard headed..... you need to look over here, you can't if you don't do this first..... You are capable of it, we all have issues, if you only knew what I have been through you aren't the only one.... 

"I don't know why me and if I could fix it I would" I say to myself.   I just want to be loved for being me like I used to.  Have shelter like I used to and have a way to describe what has happened or is happening to me where you can understand.  The worst part is I have realized that what I say to people evidently has run every single person in my life out of my life, but it wasn't what I meant to say, I said what I thought would represent what I meant but when they say what they heard it isn't what I intended for them to hear.  "Help me" is all I wanted them to hear most of the time, and that "I am sorry they don't understand" and that "I miss them" and "I love them" just like I used to, I'm just sorry they don't feel that I do, or that I am trying as hard as I should be.

Apr 11th, 2016 2:43pm

I too had a brain injury and although things have been different and may not remember many things, I trust in God because His ways are always perfect. I forgot many things including moments that I know must've been painful for me but those memories are no longer there. Yes, I may not memorize certain things but as long as I remember that He gave me my life back, I'm grateful and He was the one who saved me. I was dead. So don't worry, friend because He still believes in you.

Apr 4th, 2016 11:53pm

I died 446 days ago.   

I lost the life that I loved.  I lost the person I should be. 

I keep reminding myself that it hasn't always been this way.

But I realize now, that, it will always be this way.    

I wish I could turn back time, even for just a second, just to feel something real again - to sense time, to feel laughter, to be able to remember.  

I used to believe in God.

But

Not anymore.  

It hasn't always been this way. 

Mar 30th, 2016 10:03pm

Thinking I'm the same person, why can't I still do the same things.

Mar 15th, 2016 9:09pm

I had a stroke four months ago. I lost the use of my right arm. With lots of work I am regaining the arm and slowly getting control of my fingers. What surprises me is how exhausted I get what I do different activities because the brain is having to rewire itself. I can relate to most of the comments on this page, I am fortunate that my case is not so severe but I can empathize with others who are having a lot harder time than I. it will take a lot more work a lot more therapy and a lot more patience before I get back to "normal".

Mar 14th, 2016 2:11pm

It's like living life in a condom; there is a barrier there keeping you away from the fullness of existence and from the big you that you used to be. But mindfulness has helped me accept that I cannot do the big things, but I can fully enjoy the little things that used to just pass me by....

Mar 11th, 2016 4:49pm

Like loosing you mental sense of gravity and floating around with stop start signs in daily routines. If you cope you do it with swagger but you know its not right and you not the same inside. When you cant cope you hide.

Feb 24th, 2016 6:56am

devastating!

Feb 22nd, 2016 4:49pm

I'm like a jellyfish on the beach, little Timmy poking it with a stick "eww gross, what is it?" Everybody telling him to stop and leave it alone but just watching to see what will happen.

Feb 22nd, 2016 7:01am

Scapegoat for everything or the butt of the joke

Feb 20th, 2016 5:44am

I have come a long way since my TBI, but it has changed my entire life and left me feeling so alone. I am very intelligent and can do many things. However,when I do tell others I have had a brain injury and I honestly dont understand something, they look at me like i am crazy. Whats even worse is when I try to explain, the best I can, where I am coming from or how MY thought process works....I am told, "There is nothing wrong with you. Its you, you just dont want to (whatever). I dont believe that brain injury crap." My problem is that I have learned how to adapt into society and mask things to try and lead a normal life again but emotionally i feel like i am dying at times. JUST BECAUSE YOU CAN NOT SEE IT, DOES NOT MEAN THAT IT IS NOT REAL!!! I just want to be able to live life and to be happy on the inside and stop just maintaining from day to day. 

To all of you who are living with TBI such as myself... Keep reading and learning and maybe something will click from time to time, that will help you to understand yourself a little better. 

Thanks for reading my words and hope it helped someone.

Renee

Feb 19th, 2016 4:54pm

It has been five years of having family and friends, people I have known and trusted for years, define me by my diagnosis.  It seems to be much easier for others to assume that I am now a dangerous, negative, crazy person than to remember that I am someone they know and love.  Everyone connected to a person who has had a TBI is affected by it.  It seems that just hearing about the symptoms of TBI is enough to set off a lot of negativity and hostility in friends and family.

DJ

Jan 2nd, 2016 1:16pm

Like taking one of those tests... If you could live anywhere where would it be a) country b) city c) by water ect... Or what, where first date it's now like taking it for two people not all answers are the same. The new me answers differently from the old me

Dec 11th, 2015 3:52am

Brain injury is when you are running in all directions at the same time.

Dec 11th, 2015 12:00am

Memory taker, life changer & makes you a "new you" that don't like.

Dec 10th, 2015 2:54pm

A thief is a good definition, even if it is incomplete. My brain injury stopped my higher brain functioning immediately. At the same time. it reduced many learned and born-with physical attributes to nearly zero. Autonomic body controls were disrupted and became uncontrolled. I was paralyzed, but later worked diligently to be able to continue as a seemingly normal adult. And, I became ignorant. I had worked twenty-four years to get my education and training when this happened. I was out of the Air Force for over one year. I was highly trained. College was a review after my extensive training and work with Avionics equipment in the USAF. Now, my muscular deficits and mental inability retain me from pursuing my career in Avionics and Electronics. I know because I have tried with some mild success. But, that success was fleeting. I became incompetent. I survived his car crash, but I entered a whole new life. Who I was becoming died, but I am who is left. This incarnation is not fun. I have struggled since 1983, but I became officially disabled after working several different jobs. I had a very good resume that I could not live up to. There is so much more, but my ability to communicate has been lessened. Now, I live day to day. Happiness is nearly forgotten. It is who I have become.    

Nov 19th, 2015 11:20pm

Fear - fear of people hurting you, stealing from you, harming you in many ways, so you cut yourself off or limit the number of people you allow in to try to limit the betrayal.

Nov 9th, 2015 6:35pm

All these comments have literally brought tears to my eyes! I was involved in a multiple roll-over (x6) MVA 6 years ago. The ER I was sent to is a level one trauma center. They CT'd my head and told me I had a concussion, and within an hour after the diagnosis, had chosen to release me as long as I had someone to "watch" me. My mother (also in healthcare) threw a fit, stating that we lived more than 2 hours from this facility, and more than 45 minutes from the closest acute care center. They chose to keep me as an 24 hr observation patient, so I stayed the night. The next day, as I was literally being wheeled out the door to go home, I was administered a neuro exam by the nurse, and failed miserably, yet was still discharged. For SIX MONTHS I had difficulty speaking, as if the word was on the tip of my tongue, then it was gone. I couldn't focus on anything, and my memory was a mess. Not to mention, debilitating headaches that would last for days. Not one time was I ever re-checked post discharge, or scanned again for the presence of a bleed, or active swelling. It was over a month before I could go back to work, and that was pushing it. I tried to explain to my Dr. I did not feel "ready", I felt "off". Like I was in a fog, just as you all describe. However, I was pushed to get back to work....IN HEALTH CARE. It has been 6 years, and some things have improved, but I still "word search", find it difficult to focus, or multitask. I am overwhelmed easily, and have mood swings, anger issues, and severe cluster and migraine headaches, some of which causes temporary hearing loss in the affected side, and facial numbness. Sometimes I have difficulty focusing when I read, I see words that either aren't there, or words entirely differently than what is printed on the page.  I get angry because I feel my injury was not taken seriously, then cry because I feel like no one understands. Reading these comments have made me feel like I am not alone, and my heart breaks for all you who have taken the time to share your experiences. Thank you for sharing.....

Oct 15th, 2015 1:04am

My brain injury didn't ask me if I wanted it. Since it took residence I'd like to think I have been given a do-over. I am no longer driven by my career, I have time for you now. I will always call and I will always hold the door open if you are coming in behind me. I have the time to be nicer than you were when I was in your way when I was trying to figure out my wheelchair. Life is what I can make of it, and I am choosing to be a really kind & patient person. Kathleen Bartl

Oct 14th, 2015 10:44pm

Regressing in age. She may be 19 but it feels like im taking care of a 10 year old. That has breakdowns and mood swings.

Oct 14th, 2015 3:48pm

Living with an invisible disability that not even your own physicians or specialists are willing to see. 

Oct 14th, 2015 12:30pm

We are one of a kind, meaning, there is no one with the same brain and in turn no two brain injuries are the same.

Check out my website: www.chadfrancour.com to see my inspirational story after a TBI.

Sep 16th, 2015 10:57am

Brain injury is like being trapped in space, with no ground below and darkness ahead- just floating around.   

Aug 1st, 2015 1:41pm

After reading all these comments of others experiences I realize i am so not alone.... after my injury it was like i was in a life that wasn't mine anymore.. I was there but i didn't feel like i belonged .. I moved away from this area and started over again... 20 yrs later i returned and that same feeling is starting all over again.. it's like i'm living in a parallel world that i don't belong in.

Jul 28th, 2015 12:28pm

Was considered somewhat intelligent before I got hurt, and I still have flashes of being able to understand,but am always second guessing myself, I speak before I think, (and have no control over this behavior) I am constantly removing my comments on fb, because I just blurt out with my keyboard..It's embarrassing.

Jul 20th, 2015 10:42am

My brother was a lawyer. After the brain injury he can't talk. In the beginning he tried I convince the doctor to take the trak out. I began to give him water. Everything was slowly progressing then his facility close and he's in a place where the people don't care he regressed. .. I wish I was rich I'd be able to give him better treatment. It hurts....

Jul 17th, 2015 7:00am

I feel like a ghost and I can see the real world and people living there lives. But I just cant be part of it no matter how hard I try. I now realize how a fish must feel in a fish bowl.

Jul 8th, 2015 8:52am

Not all there, trapped , confused, brain won't answer blank,

Jul 2nd, 2015 12:40pm

Living one life and living a new one after and sad to know new limits

Jul 2nd, 2015 10:07am

Scaling a wall without suction.  You can see it, touch it, know what needs to be done but you just can't get it all together.  It's almost as if you're an unexplainable magician.  You start the trick with multiple objects and you concoct this awesome looking piece but neither you nor anyone else knows how you got to the finished product.

Jul 1st, 2015 11:49pm

missing who you used to be, while you don't remember who that was

missing friends and the ability to think and to talk right

Jun 18th, 2015 2:11pm

A LARGE PUZZLE where a number of those pieces are Broken, a few of the pieces are Disfigured and some of the pieces are Missing. I found the key (if possible) was to 'locate' all of the pieces, fix the damaged ones, adhere them together and then paint over all of them - to get some consistency. Everything has changed - but nothing has to remain where it is at .... God Willing.  The Environments in which we find ourselves is KEY.  Levels of recovery will vary, but pursue the best options available – if they can be figured out!.  Life has taken a drastic nosedive, but a Knowledgeable, Understanding and Supportive Environment will make life so much easier.  Survivors need to hang in there and move forward.

Jun 11th, 2015 4:50pm

what do u do when you are 4 yrs old and get hit by a car. years go by and now u are 45 and u still have unanswered questions. real question. whats my diagnosis? who is responsible? who pays? will i always feel like im responsible for the way i am now? whats next?

May 28th, 2015 10:37pm

like losing yourself yet feeling like you can still be him/her if just ___. like trying to claw your way out of a deep ditch and always failing. Nothing's good enough anymore and my best doesn't meet other's standards and expectations so it leaves me feeling ashamed, frustrated, inadequate, and angry. The list goes on and on...

May 25th, 2015 7:49pm

Like a word on the tip of your tongue,.... it's a thought on the tip of your brain. Lost and without a timeline.

Apr 22nd, 2015 1:26am

having thisTBI is like trying to see through frosted glass you can't tell what you see

Apr 2nd, 2015 7:16pm

It's the cat that stole my tongue.

Mar 23rd, 2015 7:01am

I have tbi too and dealing with this problem is very devastating. I'm 27yrs old and I can't enjoy life, or understand why it happened to me, antisocial, can't be still or relax, my hair keeps falling out, my eyes are bad, I think about other stuff that I have no control over, and I put all of my trust in GOD. because when I was down, He picked me up

Mar 12th, 2015 9:10pm

In a daze when I get up and some days I come out. But some days I don't. When too much going on around me I freak out . Larry

Mar 10th, 2015 10:00pm

Stripped to the core. No identity ...Cut the cord. Restart

Mar 10th, 2015 4:10pm

Lost in a fog, constantly dazed and confused, never knowing who u can honestly trust or rely on, ALONE

Mar 9th, 2015 8:33pm

 It is what it is and there is no going back. Forward is the way to move and slow it will be and cumbersome it will be and repetitious it will be and realize, this isn't going to be easy...but think, life before TBI wasn't perfection, far from it...remember, perfection is imperfection...begin anew!!! Life has slowed down immeasurably...enjoy the new you...throw out the past memories...and realize you've been given a new life...from big to small...is the calibration that has descended to fulfill your destiny...you can change and be in tune with the semantics of life and love thyself or feel pity for thyself and what rotten luck has fallen upon thee...the former is the choice of a warrior, the latter is the choice of the disgruntled...who are YOU???

Art C.

Feb 25th, 2015 10:11pm

My brain injury has robbed me of my life. I am like a puzzle with a lot of missing pieces, Easily confused, not able to multi task any longer. Cooking is a serious challenge and I am afraid to go out on my own now even to the store.

Loud noises kill my head as I suffer with non stop headaches. I am found I am nasty, Very moody, yet I feel very empty inside. 

I am off balance and fall into things. My memory is shot. I have very very limited short term memory and immediate memory is challenging as well.

I am a new person and I don`t want to be me. I want to be who I was as this new person is not a nice person. I have NO friends and thus have become reclusive. It is easier than dealing with people who will never understand me.

Feb 22nd, 2015 11:52am

My memory is less and it is very frustrating. Family and friends who want to understand and help which is great, do not really understand. Its confusing, huge amount of sadness and depression and anxiety. Headaches. The one thing I wish for is more information when you leave hospital on recovery and what to expect. I floundered around finding my own information which is very sad.

Feb 6th, 2015 5:32pm

Its like the real you died and this really old person took over your body you cant focus, no energy, headaches will not go away, migraines... I want me back im not happy, before I was very happy, I feel like I'm doomed, I cant except me now. I want to wake up and be me again, nobody knows what we go thru, they are clueless. But I'm trying hard to deal with my tbi problems but I feel like I just cant fix it why try. I have a beautiful family that makes me want to live, I want to be happy again, I miss me so much. I loved Life, God will see me thru i pray.

Feb 2nd, 2015 3:57pm

Like a prison w/ invisible walls, You lose everything. Family, friends, and yourself. because the past is taken and you are left to stand alone in the now, with no hope of a future. ATV accident August 16, 2009 lost all my memory from them back. Lost all my family due to disbelief . 

Jan 30th, 2015 1:18pm

March of 2013 my life changed forever.  I was stopped at a red light and was hit from behind by another vehicle.  Because I was turned speaking to my passenger I have a TBI.  My profession was to speak publicly to large groups of people throughout the US.  I appeared on many national media arenas.  I now stutter from time to time and it seems like it happens at the worst times.  I see words I want to say but another comes out in my conversation. It is very difficult to accept the new me. I can't remember from day to day important facts and events.  Again in April of this year a woman ran a red light, again I turned and was struck in the side of my vehicle.  Most progress which was little seems to have disappeared.  There are days that depression is so severe one has to ask is a life like this worth it.  Everyday I fear the stuttering will consume part of my day.  I do my best to see the bright light however when I'm told this could be for life the bright light turns into a slow flicker.

Jan 28th, 2015 6:22pm

I thank God that my life was spared on the evening on 10/6. I was awake for days before they sedated me. I was not fully awake. I didn't really wake up fully until pockets of 3 weeks later. I was then moved to another Rehab hospital. I made dramatic improvements. I was a worn out professional when the accident took place. I was wearing thankfully a helmet. I broken my jaw and face. Slowly recovering. Moved to Extra Strength Tylenol 5 weeks. I am healing. Thank God for his intervention, healings, and regaining of ground. They said I would forget everything, but they were wrong. I am though slowly becoming myself. I am going through mood changes and low sugar bouts. Bones healed but still working on Scapula and range of motion. I am organizing myself. Cleaning up the pile up of paper, and getting back. Stress, rushing, and my ability to scratch my head and pat my stomach not back yet. I can see again and my eyes are stronger. So very grateful for this and for sweating. Sweat glands took a rest. So I am on the road to full recovery. I am smarter. I am a spiritual person, pray, read the Word, and know that we are never alone. I struggle with prejudice, ill-remarks, and lack of understanding of others. I need to get past this. They aren't perfect. Nor am I. Staying on the road to recovery. Testing for my brain power taking place next month. Totally intimidated, but know that I have to do this. I have multiple college degrees so you would think it would be easy for me, but it isn't. I will continue to pray, trust in my redeemer, and provision of healing. Stay strong. 

Jan 27th, 2015 5:12pm

six years ago i was assaulted in a bar whereby my forehead was slammed into a door frame. when i went to the emergency room, the doctor just gave me stitches and sent me on my way without any future appointments to check on the condition of my brain. six years ago i was a happy go-lucky guy who was very jolly and enthusiastic, also i was very easily motivated. now it seems that i am emotionless. my friends and family feel as if i am a totally different person encased in another's body. it seems that way even to me at times. i am at my wits end or whatever can be constituted as wits with my injury. i feel the need for someone in my life.

Jan 9th, 2015 2:53pm

All of these wonderfully helpful and relieving  comments from people who live with TBI are comforting to me in that I now know why I have these "all over the place" feelings.  Forty eight years ago I was assaulted with a shovel handle that was broken over my head.  Back in 1966 when you went to the emergency room, they took an x-ray and if you didn't have a fractured skull, they sent you home.  Still in High School, I found I couldn't read anymore. Oh, I could read the words alright....but by the time I got to the fourth or fifth word it the sentence....I had already forgotten what the first  word was.  Sound familiar anyone?  My life has been tough.  My wife and children's life even tougher.  It eats at me.  Not until the NFL players started telling their stories of forgetfulness, rage, poor decision making, emotional  rollercoastering, continual depression, alcohol or drug use for relief, etc., did I finally make the connection.  I just knew there was something more going on than just being reckless in my behavior.  Although that's a great sign that you are in the loop.  Crying easily is another good one.  I could always cry at the tip of a hat!  I could cry from a tragic scenario to a 16 year old prodigy singing on American Idol.  I've always been kind of a mess upstairs.  More than a few broken toys in the attic! I could never figure out what it was. The bad feelings about myself from all of these years of this stuff is what really brings me to the bottom and ultimately to the brink. That's where the rage comes from.  Gives a whole new meaning to the word frustrated, am I right?  Suicide was always just a thought I would blow off because I probably leaned toward hope.  Hope that things would get better somehow change and everything would work out and be ok.  Besides, suicide was a thing that other people did, not me. Not until I was so painted in a corner that it made absolutely perfect sense to go that route and free the one's in my family the burden having me to deal with on a daily basis.  Thankfully the pills didn't work the way I planned but look what I did and how far it got.  How did it get like this...how did all of this happen.  I now know how and why it's the way it is.  It's the traumatic and or chronic brain injury that makes it what it is. Now the big question...Can anything be done to fix it?  It's always good to talk about it, I guess.  That seems to work, sometimes.  I really don't know the answer.  One thing I do know.  At least I do know now what it is.  I think we must all blaze our own trail to finding ways that works the best for us because we are all so unique with our symptoms from this.  It's very early in the game with recognition of all the effects from brain injury. I'm glad about the breakthrough with the NFL bringing to light the after effects from injury.  I'm hopeful the future generations of people to come with this infliction will benefit from the studies and science to make better the silent side effects from the trauma that we now, today, try to endure on a daily basis. You folks who are on this site because you are looking for answers, don't give up on yourself like I almost did.  Keep trying, keep hoping, do the leg work and try to continually find some help somewhere, anywhere.  If it doesn't work, try something else.  Just keep trying.  Who knows, we might get lucky and finally find some peace. We are all in this together as a small group of warriors. It gives me some kind of good feeling from not being alone in this, that gives me some kind of a power that I can finally be heard on how and why I feel the way I do. Good luck to you my comrades. My thoughts are with you. Share your valuable thoughts and feelings with the rest of us.  We can learn so much from each other about things we thought were only our misgivings. Jump in the boat and grab an oar.  We are all most certainly in this together.  Hang tough, smile when you sometimes don't even feel like it. Stick with the things that make you happy or give you peace. May the force be with you.  Rick, Jersey Shore.  P.S. It made me feel good to write this!  See, some things do work.

Dec 14th, 2014 2:27pm

I received a severe concussion at work (State Prison). A few months later my son-in-law, an IT at a college,  suffered a heart attack.  He can't figure out why he was able to go back to work after 6 weeks, but I'm still recovering after 8 months.

Dec 14th, 2014 7:11am

I ws in a car accident last year.  ONE of the things that hapened is that my head swelled up, giving me SEVERE headaches.  My forehead hurts, as well as the back of my head.  It feels like a band around my head.  A MRI was done, and an angio of my head and neck with and without dye.  I am told that I did not bleed; however, I still experience the same pressure. The headaches are relentless.This is an emotional rollercoster. My family does not understand. I have done some strange social things.  I'm not social. And I cry easily.

Dec 9th, 2014 12:30am

misinterpreted by a lot of people, which partially leads to frustration felt about this. It's hard to get used to my cognizant disabilities now compared to never having them before, and the list can go on and on.  

Nov 26th, 2014 1:45pm

There is no need in writing things down to remember..because I forget to remember I wrote them down..it totally leaves my mind once its done :'(

Nov 24th, 2014 2:14am

Realizing something is different but unable to define it...

Nov 14th, 2014 8:21am

I can only share with both victims and family members to be optimistic.  As TBI victims we are incredibly fragile but strong and resilient as well.  I suffered a severe TBI in August of 2012.  I tell others part of me died that day, but other parts of me flourished.  Family and survivors stay strong and stay determined.  Time helps victims like I but patience and understanding does as well!

Nov 14th, 2014 7:24am

Compare to someone updating your computer with a new and unexplained operating system without your permission.

Nov 13th, 2014 6:28am

A gift in disguise...I got a new fulfilling life, one that I embrace with love and acceptance.  It took me many years to see it this way.  

Nov 9th, 2014 3:10pm

like trying to row a boat with only one hand/arm.  I'm still going somewhere ... it's just usually in circles.  Everyone else travels from point A to point B.   I hit every letter in the alphabet.

Nov 5th, 2014 8:23pm

It,s harder than it looks, I,M on a Mountain right now, it,s a challenge, i,m going well, but its just the base of the Mountain, I climb higher,it gets more difficult, BUT I cannot get off this MOUNTAIN. ever...

Oct 23rd, 2014 7:22pm

Living each day with that looming feeling that you've forgotten something.

Oct 12th, 2014 3:04pm

like the whole world is comprised of window dressing (I think that's the right term, a real term - the old me would know). i see a store, a house, a drawer, a book and from the outside they appear perfectly normal; But when I open the door to the house or the store, there's nothing inside.  When I open a book, the pages are blank.  When I open a drawer, it's empty.  Everything serves as  a prop in the one woman play for which I never auditioned.

Oct 10th, 2014 12:54pm

Being an android. The only thing I'd really like to do is cry. But I don't have the ability anymore.

Sep 26th, 2014 2:50am

The past 27 plus months of my life have been about dealing with people who have amazing complexes, and they can only obtain parity by taking advantage of someone else.

Sep 23rd, 2014 11:52am

I was 21 when it happened and then I can say that I am a survivor of a giant brain aneurysm.It`s a life changing experience and I learned that we cannot take everything for granted because we never know when our life can change by the events.I do appreciate little things those you cannot buy with money and I admit that I still in denial in some days and saying "WHY ME?".It`s painful and is  a  sort of sadness veil on my thoughts everyday ...copying and struggling in a continuous dance...appreciating and hating life at the same time,happy to be alive but struggling to accept it the new way

Sep 20th, 2014 5:12pm

like running backwards up a sand-dune. To carry out the most basic tasks requires SO much more effort & energy than pre-mTBI. As my Specialist states, 'there's nothing MILD about an mTBI...' Of course, I look the same on the outside as I did before the assault & pre-mTBI so everybody expects me to function as I did before.

Sep 20th, 2014 12:14pm

My version is this: TBI is like having a water hose to water the garden. The hose has so many holes in it you cant direct the water to the spout where you want it. The holes sprinkle enough water to mess up your clothes, your grip on the hose, and spray water in your car,your glasses and on the neighborhoods cat...all stuff you try to handle but every time you turn one of the other holes is spraying water somewhere else. Whenever you try to turn the hose, theres to much pressure and strength in the hose for you to wrestle it in the direction you need it. Stop one hole and the others rage, the hose spins out of control. You look like are playing in the water and breaking flowers irresponsibly. The only answer seems to turn the pressure completely off but unfortunately that means suicide,,.the knob is stuck on full blast.

Sep 16th, 2014 9:46am

A Nightmare! Almost 14 years since the car crash that I had survived, 7/15 on the Glasgow Comma Scale... lucky boy! I had a mental brake down 2 years ago and life has been hard, everyday is some kind of struggle. Stressed, memory problems, flashbacks, emotional, depression, anxiety, fear of life and no longer wanting to be here. Lost Mum 8 weeks ago so that is a hard time also...

Sep 14th, 2014 6:27am

...communication is the hardest thing to do...how do you tell someone something is wrong if you can't explain what it is? It's as though half of my body has been stuck in quicksand for 30 years (the top half!).

Aug 22nd, 2014 7:29pm

more reason to develop resillience, persistence, fierce self confidence AND humility. because guess whats there if you don't build that boat for yourself? a world that doesn't understand you, might even tell you you're making it up, and expects you to accomplish X Y and Z because you look fine. TBI is being dropped in a pool and told to learn how to float, then to swim.
 

Aug 22nd, 2014 2:48pm

Believing in yourself every moment of everyday.

Aug 21st, 2014 10:33am

Its a marriage that I never agreed to nor did I ever want its the nagging spouse that makes your good days bad and your bad days worse and will constantly remind you... Baby I will always be here for you...

Aug 16th, 2014 4:39am

A long strange trip without a light at the end of the tunnel.

Aug 8th, 2014 10:26am

The writer Larry McMurtry summed it up best for me, "It's like death, only you get to live"

Jul 29th, 2014 4:55pm

Knowing how how to do something and being physically able to do it but not now you're mind wont let you anymore. Go from ripping apart heavy equipment one day to nauseated from the sound of an engine the next. You can remember what fun is and what normal is and all you want is that back and it just never seems to come. Marcus

Jul 28th, 2014 2:31am

"If only I could turn back time.." thoughts everytime. Jack. Mongolia

Jul 23rd, 2014 10:53am

I lost the life that I loved and hate the one I now live. Warren

Jul 11th, 2014 5:46pm

 Only survivor. It's being surprised by the words I say sometimes...I'll use a "big" word and think, how did I come up with that? Do I even remember what that word means? I used to know it--pre TBI--but it's usually like a Chinese word to me now. Except it will pop out on my "good" cognition days...and now, post TBI, I can barely remember the word and wonder what overturned file cabinet in my brain just righted itself for a second...(Received my TBI,  when a 10 ton water truck pummeled into our vehicle 30 years ago).

Jul 10th, 2014 5:10pm

My injury occurred when I was 20 years old. Like trying to decide whether to sue or not, I decided to focus (excuse the pun) on recovery and a creating a positive future for myself. 25 years later, I have learnt to live with it. Those around me help me to 'ignore' it and I have had a high function type lifestyle, but at the cost of my confidence, hidden confusion and memory loss. Have other women noticed a direct link with premenstrual fluid build up ? Has anyone done any studies referencing TBI with the menstrual cycle ? After about 12 years (and children) the effects were lessened to the point that there was no futher relationship between TBI and the premenstrual cycle. Curious about others experiences. 

Jun 25th, 2014 8:38pm

When I disappear for awhile, I like to tell my family and friends I was on vacation. I just don't know where I went or who I went there with. Karen

Jun 22nd, 2014 11:40pm

To me it's like being lost in my own head. I don't know where I"ve been and I don"t know where I'm going. It's like being caught in a swamp and I can't get out. A terrible depression comes with it.

Jun 22nd, 2014 10:20am

Amazing and I love who I am now. 100% new me that isnt easy but simple.

Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me.
Revelation 3:20

Can you tell everyone about me?

IM THE TRUTH AND THE ANSWER TO STOPPING DRINKING AND DRIVING FROM TEENS TO ADULTS!!!!!!!!!!!!

https://www.facebook.com/pages/Billys-Blessed-Angels/500297750008058?fref=ts
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Jun 11th, 2014 9:40am

Like looking in a mirror and seeing someone else.

It is like trying to walk straight through a strong tornado.

Brain injury is living a life that you do not even know, being replaced by a new you!

Jun 5th, 2014 8:48pm

Feeling like your best is a taste a away but never comes for every one progress another problem comes around.

May 29th, 2014 10:12am

"Walking on eggs shells and not knowing what the current day or the next has to offer" Randy L Summers

May 16th, 2014 2:27pm

I just learned my TBI is cause for how I have felt (struggled) for the past 25 years.  No one told me...  until now.  My mind spins.  I think very fast (like brainstorming), and then become exhausted and have great difficulty making decisions.  

Disconnected, isolated, misunderstood, "so close, yet so far away", alternate universe (on the outside, looking in), 2-second delay, apathetic, forget to remember to look at lists I write, forget goals, useless, unworthy, etc...

May 12th, 2014 11:01am

Definitely feels like im a senior sometimes......but im only 20. Its embarassing because i am actually pretty intelligent. ;/

May 5th, 2014 4:37pm

What I always tell people about my memory since the TBI is: "I am like a computer with a broken processor, the memory is there, the indexing is poor." - Jeffrey B.

Apr 27th, 2014 9:04pm

All I can think of is its like my life is an etch a sketch where I shake it and then I have a fresh start.  I feel lucky each new day because I know I am alive.  Do I wish it never happened ?  Of course I do but I'm realistic and this is my life now.  And the most important thing is I have life!  Its a journey each new day...

Apr 22nd, 2014 12:53pm

it is more frustrating than anything i've done or been through! i'm recovering but so slowly it's depressing

PLEASE SOMEONE HELP ME!!  a 23 yr. old living in pittsburgh,PA

Apr 20th, 2014 6:37pm

Being lost in my mind, not knowing the words I need, obsessing so I dont forget not being able to recall what the man looks like who hit me so hard he cracked my picture of him. I want to remember what he looks like so I can find the bastard & run him over (rageful).Everything is slowed down now, my head hurts more, my neck my back, I am confused & dizzy.

Its irritating & scarey

Apr 18th, 2014 11:25pm

Frustrating not remembering even the greatest moments such as the birth of my daughter , starting a conversation and forget what I was talking about somewhere in it , maddening ringing like a gun fired next to my ear . Emotional wreck most of the time , fumbling & stumbling isn't funny , feels like I fell asleep in a rotating dryer , movements require intense concentration , angry alot . I don't look at pictures cause I really don't want to know how I used to be ....it hurts too much . But all in all I'm determined to do some things , it (tbi) took alot but I won't let it have it all. Hit in Feb.2012

Apr 4th, 2014 7:22pm

the BEST WAY i can describe it... cut n dry... is like having a chalkboard n your head, only the slate is WIPED CLEAN :/

Mar 30th, 2014 11:39pm

I have been living with my brain injury since I was 6 years old when I was hit in the head by the batter and knocked unconscious .  At the age of 19 I fell off a forty foot cliff while fighting a fire in the California Conservation Corp.  When I finally landed in the hospital they said I had a TBI and Hydroencephalitis.  They gave me a VP Shunt to help drain off all the extra fluid on my brain.  Which helped with the headaches.  But it is not a permanent solution and has been repaired or replaced some 14 times.

Mar 22nd, 2014 1:00pm

Brain injury is..... A bitch. Can't ever get away from it. Survivor 34 years.

Mar 20th, 2014 6:50pm

Remembering who I used to be and not remembering me now.  Frustrated, angry, sad, confused.  More than anything deeply saddened that I don't remember my son growing up.  Thankful that family gave me a camera for pictures of him.  Truly angry that the person that did this to me only got a $100 ticket and I almost died!  So much that I don't remember.  Started writing a book about it but can't remember sequences of things.  Just so frustrating because I can't get the care I need!

Mar 20th, 2014 11:31am

i remember my days in the hospital some 35 years ago and i went to a park in OKC just to get fresh air and change of scenery.  I jogged after a Frisbee wrong thing to do.  i felt i was in a glass cage and i did not know how to get out.  Who was this new person inside my body and mind?  I was strong 17 year old that could do anything i wanted and communicating was a breeze  not any longer.  I facilitate a brain injury support group with my work and i used the illustration of brain injury is like a Rubik's cube the colors represent ones ability to be whole and the jumbled colors are a survivors current ability to deal with a ever changing world.  Praise God when two of the same colors align.

Mar 12th, 2014 4:06pm

VERY FRUSTRATING!!  I can't find words, they're like files all screwed up.  I remember through repetition but nobody's repeating just getting upset!  Had a hard time accepting the new me and letting go of the old me.  I fought hard to get my life back.  I'm now trying to find where I fit in with my limitations.  I'm afraid of the world.  Everyone expects me to be normal.  I don't feel normal whatever that is anymore.  No one relates to  the TBI. They don't relate problems with TBI. I tried working.  Put in 60 hr wks making up.  Burnt out. 

 Bobbie1988

Mar 8th, 2014 11:36pm

I was blown up by a truck tire in 1976 i have gone down hill ever since i was married in 1985 i was divorced in 2009 because my wife could not deal with my brain injury i am all alone i feel like no one cares i struggle to survive i can not remember things i have good moods & bad moods i am angry & don't no why I say things i dont mean & hurt others i dont mean to it just happens there are times i know what want i want to say & but i cant get the words out. this life is hell on earth. Desmond

Mar 8th, 2014 12:22pm

Like being robbed of your identity and purpose in life but every single day you get up and try so hard to be even half of what you were....and Never getting there. 

Mar 1st, 2014 10:54pm

Memories are shadows observed from afar.

Feb 27th, 2014 10:59pm

TBI survival is having your automatic transmission magically changed while you sleep into standard transmission. You start at the beginning learning to shift & clutch in EVERY activity whether drinking water without choking or sitting up in bed. Unlike an infant who, with practice, goes into automatic transmission you are stuck in standard transmission forever

Feb 27th, 2014 1:40pm

A lifelong commitment of love, caring, support and patience for the loved child who was in a deep, dark coma for so long. Upon wakening, this child is not the same one who was in an accident, who was away for so long in a place that we will never understand. It is a lifelong commitment to God for returning this child to me regardless of the  changes that occured during this illness. A lifetime of understanding and nuturing. Guidance,  grief, acceptance and denial. Happiness, anger.  Wonder and hope.  He is with me and for that I thank God. He was my little boy, and now he is my wonderful young man.

Feb 27th, 2014 1:33pm

It's like trying to think clearly and live my life

in the middle of a Hurricane

Feb 27th, 2014 10:42am

I feel like I'm never going to be the same. I look in the mirror and I see me but, it's not me. I don't think the same. I don't feel the same. It is so hard just to get out of bed everyday. I use to love being around people and family. Now I cry when I'm in a crowd of people that are my family. But I feel like i don't  know them anymore. It's a sad and scary place. I would give anything to have my life back. I guess I need to start excepting that this is my new life. The stories i have been reading don't give me much hope that I will be returning to a life that I once knew.  PJM

Feb 27th, 2014 9:23am

Feeling like Alice, falling down the rabbit hole.

Feb 26th, 2014 6:55pm

Like my brain/mind is broken, placed in a wheelchair, no room to maneuver in my head, yet with no arms and legs to move it around to figure it out...and no one behind to help push.

Feb 26th, 2014 5:46pm

when your computer gets a virus.  Starts acting funny.  It does inexplicable things. 

Feb 26th, 2014 4:19pm

Traumatic Brain Injury is the hardest struggle one can ever have! It puts us in a fight with ourselves, a fight that cannot be won!

Feb 26th, 2014 3:46pm

I'm the wife of a TBI patient.  He was blow up in Iraq.  Seeing him struggle from the outsiders point of view is like watching him stand inside one of those giant snow globs that people put on their lawn at Christmas.  He is standing in the middle and all the little pieces flying around are his memories.  He tried his best to grab and hold on to as many as possible.  But as soon as he reaches out and grabs more the others are lost.  Everyday is a new day.  Or like all our none injured people have memories in folders in order in a filing cabinet.  All his memories are in one folder and out of order and almost impossible to even attempt to fix. 

Feb 20th, 2014 10:54pm

Like trying to do everything knee deep in mud

Feb 20th, 2014 7:36pm

Thinking and talking through thick gumbo mud, sometimes walls pop up to block the way.

Feb 20th, 2014 3:41pm

Mine causes brain fog and memory loss. I get confused when too much is given me at a time. Sensory overload.

Feb 20th, 2014 3:39pm

The lights are on and, YES, someone is home, it just takes a little longer to respond. Kat ;)

Feb 20th, 2014 3:37pm

Living in a fog with a buzz. So lonely as people cant accept you are someone else. Standing on the sidelines of life wanting to be included but at the same time afraid of the crowds. Days the depression is so black and heavy that breathing is a chore.

Feb 20th, 2014 3:08pm

Sometimes it is hard to believe that something so minor, fast, and random still causes such a disruption to my daily life.  I can function, but the changes are subtle.  I am not the person I was, and my colleagues think I am making it all up. So, I would say, TBI is an injury that can cause incredible self-doubt, which leads to that anxiety...  Which has led me to an even greater compassion to everyone suffering the effects of this invisible injury.  

Feb 7th, 2014 4:39pm

Like playing golf... alone...with every shot going towards the sun and playing with a grass colored ball... It will be a tough and VERY long round with lots of people watching, waiting and annoyed at your slow pace!!!

Feb 3rd, 2014 10:14am

Feeling like I am looking from the outside in at my life. Moving more slowly and deliberately. Double checking. Questioning old routines. But somehow it is not a sadder place. It is not a stressful place. From my new outside view I just see  areas for improvement in like how I used to react to emotional circumstances.  I just ask myself, with chuckle."Why do you do that?" "Don't do it that anymore". 

Is it weird I am just taking my month or so of recovery from a mild concussion to remodel myself a bit? When I found myself again I saw that me needed a little fixin' up. 

So far, my family doesn't freak out as long as we can talk about what their perceptions and concerns are and I can explain what I am feeling to them. But my not being my "old self" is disorienting to them.

Feb 2nd, 2014 1:20am

it's like trying to climb Mount Everest with ice skates on WTF? How about when you feel like you should put yourself in a time out because of the ignorant comments or come back that you just said not purposely to people in your life?...these uncontrolabel moments are crazy!

Feb 1st, 2014 7:02am

After 29 years of being a tbj survivor, I have know gained the knowledge that I can only consentrate on ome thing at a time and hope that I will be able to finish what I started doing before l get either to tired, frustrated, bored , angry, or just to worn out trying to do what ever it is.

Feb 1st, 2014 3:50am

Life is changed forever. A true test of character and determination to live life in slow motion. Feeling isolated from others, but getting to know myself and God better. It can be depressing at first, then you realize how glad you are to be alive and decide to live and enjoy the life you have, now. I'm still the same person, just slower. I can't take anything for granted. I have to work for my health and quality of life to be restored as much as possible. Walking and dancing make me feel alive. Eating healthy food and resting helps me stay calm and restores me from the stresses of each day. I know how to encourage others who are suffering. Life is still beautiful.

Jan 31st, 2014 12:48pm

A TBI is llike knowing what to do, but doing it takes soooooo long. I have been on the roller coaster for about 42yrs. and it gets better at times, then there are times when it is like it yesteryear. I am just grateful to be alive. I still need help at time.

Jan 31st, 2014 12:38pm

.....like mashed potatoes. 
.....like being in a constant fog.
.....frustrating; embarrassing; fatiguing...
.....did i already do that?
.....what was i going to do???
.....you mean, we went down this road/visited this place already?
.....what's your name again?
.....it's my turn to make dinner.....again????? (a week later)
.....trying to remember something you KNOW is in your head but have no way of pulling it out because you can't find it........
.....wanting all the noise to stop!!!!!
.....wanting the world to stop spinning....
.....wanting to sleep, just to sleep.....
.....wanting it to be the day BEFORE the accident, when life was "normal".....
.....working through your breaks/into your lunchtime/after hours because you were too slow during the day
.....having conversations with others who think that you're understanding but in your head it's really like the voice on the other end of the phone in a Charlie Brown cartoon

Jan 30th, 2014 2:05pm

Living with a TBI is like being thrown into a raging sea. Incessantly fighting with all your might to stay afloat. Every once in a while a calm comes, and you know the fight is worth fighting.

Jan 21st, 2014 3:38pm

Like the mirror from Harry Potter, you see things in the reflection of perfection. Then you look down at yourself and realize that it will never happen for a multitude of reasons.

Jan 20th, 2014 11:58am

Worry about changes. Are they just getting older, or related to the TBI

Jan 19th, 2014 2:22pm

Somewhat like a tree. It begins with 1-leaf and then adds many more. One can look at this a negative or a new beginning. I see it as a new beginning with all that is composed of it.

Jan 16th, 2014 5:16pm

Most of the time, I feel like I just got off twisty amusement park ride; my head never clears; it is always dizzy. Crowds, noises, and lights frustrate me.I never know when a headache will surface, which part of my head will hurt, how severe it will be, or how long it will last.People don't realize that thinking is sometimes exhausting, frustrating, and difficult at times. It is hard to plan ahead because I am never certain of how I will feel.


 

Jan 16th, 2014 6:45am

Like trying to climb a staircase but just as you reach a new level the staircase collapses.  Constant dissappointment as you try to achieve things but end up with extreme brain fatigue for days, sometimes weeks, watching everyone around me out enjoying holidays and doing things in their busy lives like i used to do but knowing that I'll most likely never be able to do those things that most people take for granted, again.  Its lonely. Lots of grief but also some amazing learning, Being good at Living in the NOW, Compassion for others, Knowing that Love is what lifes all about.

Jan 16th, 2014 3:33am

It's like I've been digging myself out of a grave since the day I woke up. I consciously watch thoughts leave my head as I'm saying them. I am still the same person trapped in this limited mind. I wish I knew how to get myself out of this mess. I wish I could fix my brain and heal the broken connections. At times I mourn the brain I uesd to have, but I also celebrate the person I am today who is conscious of it all and still finds the strength and courage to keep on keeping on. I will win this silent battle.

Jan 15th, 2014 8:30pm

 I did everything backwards from talking to brushing my hair had to relearn how to function again and did with the help of my MOM and DAD and both of my daughters. I also still have a hard time remembering things from the past. People, places, incidents, sometimes it is a blessing other times it is a hardship.

Jan 15th, 2014 5:25pm

Life altering...

Jan 15th, 2014 3:50pm

I have lost my job.I yell at people and frighten them and myself. I am ashamed of myself and don't leave the house much anymore.I have pain and think about it too much.I don't sleep without some dream or headache waking me up.I think about the same stuff over and over.I talk about the stuff over and over, An example of some of the things are people talking about me small things like did i raise the flag on the mail box.My inter voice talks out loud and i embarrass people. I am a outsider and the scary black sheep of the family.

Jan 15th, 2014 2:56pm

For me it was as though I had gone through the ageing process within a day. I don't feel capable of doing what I used to be able to do... I am slower, I tire easily, I often mix words up or can't find the right word, I can't remember my past in detail, I forget names and dates and things that used to come to mind easily... And then it is definitely the case that you really don't feel like the same person anymore.

Jan 15th, 2014 1:32pm

Sitting and trying to fight back the pain from the headaches and trying to remember what my wife asked me to do for the day. And trying not to loose my temper at those I love . TBI sucks big time but I've gotten used to the painful headaches that I've had for 9 years and only go to the E.R. when the pain stays at 10+ for over 3 days.

Jan 15th, 2014 12:39pm

Getting up every morning and thinking "here we go again!"

Jan 8th, 2014 3:57pm

A new day every day all day long. Confusion like my brain needs to be turned on every minute of eveeyday but I have no one button or reset button. Oh the pain just trying to think hurts so much like a bad joke. Having a good loving and caring support system is so helpful since I cannot remember how to drive or take care of myself at age 36

Jan 3rd, 2014 12:04pm

Mourning who you were and accepting who you are now. Relearning things you use to know, and trying to remember things you should never forget. TBI means writting everything down and having constant fatigue and migraines. It's also about... learning to sneeze without feeling like you're're blowing your brains out ;) Most importantly TBI is about counting our blessings and surrounding ourselves with people who understand and can appreciate our unique situations. PEACE & LOVE ~KAR

Dec 30th, 2013 7:51pm

To me it is knowing what I was, fighting to get it back, losing more of who I was, and then finally trying to forgot my past achievements and instead focus on who I can now become. It is extremely frustrating some days, and then other days I have small windows of time in which I see all the ways that I have been blessed through my injury. It's an emotional rollercoaster and I'm still waiting to see where it goes.

Dec 29th, 2013 10:09pm

TBI = Life will never be the same...and it does not get any better !

TBI the INVISIBLE injury

 

Dec 29th, 2013 8:31pm

as if all the things on the desk get swept off, about every 10 minutes.... or another way to see it: its as if the 'computer's' hard drive overloads and shuts down for a while, like the old window 3.1 if more than one item tries to open at once....   thanks! it just means learning a new way to do just about everything...

Dec 27th, 2013 8:37pm

Like a Tornado or Cyclone of Emotions then don't remember what was said or did an wonder why Folks getting upset

Dec 27th, 2013 7:34pm

Like I forgot to do my homework and can't remember how to get home!

Dec 27th, 2013 1:57am

I liked the analogy of the puzzle.

My twist on it would be: I am carrying a puzzle box. All the pieces are in there. I trip and the puzzle box goes flying. The pieces scatter. Others come running to help me pick up the puzzle pieces, but we can't find all of them. Most of them, but not all. The puzzle can still be put together more or less intact. The whole puzzle picture is still readily recognizable, but some pieces 'are' missing. It's difficult trying to describe what the few missing pieces mean, to the overall outcome. It's just difficult and there are no - comparators.

Dec 26th, 2013 9:28pm

Playing hide and seek with most things like; memory, your past, your present, balance, expressing yourself correctly, being coherent...

Dec 26th, 2013 7:42pm

Trying to dance in a room filled to the ceiling with thick jelly.

Dec 26th, 2013 4:28pm

A ride you cannot get off.

Dec 26th, 2013 1:11pm

No taste or smell to trigger any lost memories.

Dec 23rd, 2013 3:03pm

never having an easy day again.Make the challenges enjoyable. They are not going away.

Dec 21st, 2013 7:08pm

When I pull my car out of driveway and into the road but I don't remember where I'm going.

Dec 21st, 2013 1:50pm

Like dumping over a giant file cabinet, full of the "files of your life" & then spending the REST of your life trying to put everything back where it was... (sometimes only half ass... cuz that's THE BEST you can do/hope for.)

Dec 21st, 2013 9:10am

Like having handcuffs on you brain. Keeps you restricted in your thoughts most times. When you do have a thought or something to say....by the time you try to get it out...the thought is either gone or changed all together. Very frustrating..

Dec 20th, 2013 2:02am

I resonate with every one of these statements. But I removed myself as much as possible from the life I had chose to create my own little world that embraced me for the person I became. My new community had no expectations of me to 'get back to normal'.

I love the internet because I get to choose who I interact with. *This is one of my favorite sites.

Dec 19th, 2013 11:23pm

My Filing system is completely out of whack!

Dec 19th, 2013 5:12pm

like being betrayed again and again.
 

Dec 19th, 2013 2:40pm

TBI may cause memory loss but the one thing that never goes away is how it happened.

Dec 19th, 2013 2:37pm

A long and strange journey that doesn't seem to have an finish line.

Richard

Dec 19th, 2013 12:54pm

Like reading a book and none of the sentences are finished.

Dec 19th, 2013 11:31am

I asked my son this question in order to post of his behalf, his words "I don't know"

Meaning he is not aware that he has Anoxia brain Injury- And that his/our life has forever changed. Its been 11 months now since he was hung, spent the first month in a brain recovery center, 7 months of PT/OT and now its him and I for the long hall. I want him to understand, but yet I don't, he is happier today than he was before all of this. K.B.

Dec 19th, 2013 11:06am

Visual issues & headache daily make you long for the old you which now gone. Frustrating!!

Dec 19th, 2013 11:00am

My thoughts used to run like lightning now it feels like my thoughts are running through oatmeal!!!

Dec 18th, 2013 12:01am

Like everything has been reset

Dec 17th, 2013 10:51pm

The medical field has helped by saying, "It is, what it is."

Jimmy Stewart puts Life into perspective as Harvey quotes, "In this world you must be oh so Smart or oh so Pleasant.  Well, for years I was Smart.  I recommend Pleasant. You can quote me."

It hurts and causes problems to hold on to your past self.  Consider yourself, with all the brain fog, shakes, and aphasia as the New Normal.
 

Dec 17th, 2013 8:16am

Is isolating...  lonely, scary, clumsy, and amateurish.  ~Tawana

Dec 12th, 2013 11:46pm

Sad... because tomorrow I will not be able to recall one if these comments unless I write one down.

Dec 12th, 2013 2:45pm

I lost the majority of my vision with my TBI almost two years ago. I only have hand motion now, but though that should have been something good, I also experience hallucinations. My world is bright, colorful and so confusing it hurts. I don't know what is real and what isn't and somewhere I lost myself on the outside along with everything else..

Dec 5th, 2013 6:01pm

missing what you once were able to do.

-Adeeb

Dec 4th, 2013 5:00pm

Invisible. That's how I feel. People who used to listen and hang with you suddenly act like you're invisible. Lonely is another one. Mostly totally  confused all the time. Like you're in the middle of an ocean trying not to drown and everyone else around doesn't even realize you're there and that you're in need of help.

Dec 4th, 2013 12:05am

Constantly feeling disconnected/lonely & chronic mental fatigue.

Nov 21st, 2013 5:40am

You can never say or do the right thing with family and friends any more!

Nov 17th, 2013 3:29pm

You want your old life, back, but will never know what it is or how it was like it\'s just a reboot - Dylan

Nov 9th, 2013 3:46pm

remembering how i used to be and not feeling the need to talk about what happened just accept the present. The access is not there why struggle to when the words are not there? Some people think you have a bad attitude and I don't

Nov 4th, 2013 2:06pm

the loneliest, most frustrating time of my entire life. Its like forgetting who you are and wondering if you will even come back. So much doubt

Nov 3rd, 2013 9:26pm

Like living in a dark cave hearing faint echoes of memories knowing they are there and not being able to find them in the dark. ~Doctor become patient

Oct 23rd, 2013 7:20pm

For me it is like waking up every morning with a hang-over even though I have not taken any alcohol

Oct 21st, 2013 5:18pm

Standing in the middle of an intersection and everyone is honking their horn for you to move, but you can't.

Oct 21st, 2013 4:20pm

Like being a Stranger in a Strange Land.

Oct 20th, 2013 11:46pm

Feels as If you're starting over with life again.

Oct 20th, 2013 9:32pm

So many good comments! For me, its becoming a puzzle that has been scattered, some pieces soaked in water until the images have come off, some twisted to the point that you'd have to hammer them into the puzzle if you could figure out where they fit, some like they'd been carried in a little boys pocket along with several rocks for weeks, all this then occasionally you get a glimpse of the portrait, see who you are(should have been)but are not nor will ever be...Hubert Rondeau Alberta Canada

Oct 19th, 2013 10:41pm

Like driving an old jeep with shaking steering down a road filled with potholes, you've got to be constantly correcting yourself.

Oct 19th, 2013 6:58am

I struggle every single day to stay on this earth.

Oct 14th, 2013 12:40am

A TBI makes it difficult to get from point A to point B every single day. One never know if you will make it. It's getting lost in an area you have lived al your life. It's not recognizing people you have know for decades.

Oct 14th, 2013 12:37am

They say you're lucky, but it never disappears.

Oct 14th, 2013 12:06am

I took a picture of the ending of a day lily. There are no color, no life. I wrote on it - "Memory of myself". molly

Oct 13th, 2013 11:59pm

Walking up the down escalator of life

Oct 12th, 2013 11:50am

My son seems to be on a path winding through a dense woods and every few steps he veers off the path and wanders about until finding the path again.

Oct 11th, 2013 7:19am

more understanding ,after seeing my MRI 10 years after TBI-how the brain rework around dead frontal lobes spots ,still so wonderous

Oct 10th, 2013 6:21pm

I'm getting better! It took me a year to be able to read a book. But I can do it now.

Oct 10th, 2013 6:01pm

It seems like I've been asleep and woke up and everything was different. Not because I remember the way things were pre-TBI, but because I don't remember.

Oct 10th, 2013 5:09pm

It is a feeling like you brain is stuck in quick sand. All I can say is don't give up. It's going to be hard but don't give up. Get into a TBI support group or if there isn't one start your own. Exercise, read, meditate, do yoga, hike, eat healthy, all of these are wonderful for your brain.

Oct 10th, 2013 2:57pm

TBI, esp. Mtbi is a lifetime of explanations to strangers, begging for mercy (lower the music, talk slower, etc.) and being treated like a partial person if can't manage allergy reactions to diabetes medications, amputation, heart attack, kidney failure. It is the syrup on the plate that rolls off the pancakes of life onto clean tablecloths and your best clothing. It gets old after a while to keep on explaining that I am a tbi survivor, therefore this and therefore that. I'm tired. And I sure didn't deserve it.

Oct 10th, 2013 2:27pm

I liked the analogy of a TBI being like a cage. When I was in my coma I had a very long dream of being tied to the mast of a ship. No one could see or hear me so they kept moving. I feel like this is a wonderful representation of what had happened in the years following my accident... ~a lonely soul

Oct 10th, 2013 10:12am

My head hurts and brain is collapsing from reading all these comments. So I stop for awhile and start again. Every day is like this.

Oct 4th, 2013 12:38pm

Living with a brain that makes you become a NEW you unwanted

Sep 26th, 2013 1:03pm

All that used to be familiar. Now become strange and broken in pieces, that just will not fit togeather. Phil

Sep 14th, 2013 2:19am

Depressed, angry,and I do not recall the doctor mentioning this huge sunken part of my head/face. Droopy eye.......an emotional roller coaster. I want off!

Sep 9th, 2013 12:08pm

What was the question?

Sep 8th, 2013 12:47pm

part time intelligence, part time chaos and confusion. Hard for others to see a condition that has no apparent visual tells.

Sep 8th, 2013 3:22am

a constant challenge of physical pain, stamina, emotions and faith.

Sep 7th, 2013 4:23pm

the continual struggle with everything.

Sep 7th, 2013 3:15am

an Assassin. It claimed the life of my wife, but it was a long slow and often painful sentence. 18 years of slow deterioration, although the last 3 months was rapid.

Sep 7th, 2013 2:35am

Being alone in a crowded room. -Brian

Sep 7th, 2013 1:53am

I feel like a freshly shaken Etch A Sketch

Sep 7th, 2013 1:04am

Like thick cataracts and super loud noise all the time. Been living with it most of my life. Sometimes death looks appealing

Sep 6th, 2013 11:17pm

Extremely frustrating at times especially trying to process to much at one time. You eventually go dim yet u think u be able to do it all. Then the numbness sets in and the processing ceases and it's not that u don't care u just burnout and fade. Kevin

Sep 6th, 2013 10:36pm

I've always described my injury like I was reading a novel. I was enjoying the story, then one day I couldn't remember anything I read, so I had to start over. When I opened the book to the beginning to start over all the E's T's R's O's and N's were missing from the words. I could still read the story but it didn't flow as easily anymore. I got tired, and frustrated quickly trying to read it. It wasn't as enjoyable anymore. Nancy Garland - Ontario, Canada

Sep 6th, 2013 9:37pm

at times severely depressing when you tell people you have a TBI and they don't believe you ...when trying to make decisions the brain becomes overloaded to the point of avoidance ...when support is needed the most there is no one there ...

Sep 3rd, 2013 9:53pm

when your sporty car comes to an end, just like most of your social aspects in life, you were proud of, come to an end too...

Sep 3rd, 2013 8:45pm

...being alone!!!

Aug 30th, 2013 8:01pm

the lights are on,but nobody\'s home. Getting overwhelmed looking at a menu and not being able to make a choice. never having a drink, but drunk all the time.

Aug 29th, 2013 9:21pm

Being very easily overwhelmed by too much of anything around you.too much noise, conversation, images, wind, rain or sunlight. Constantly wanting to retreat to a dark cave with a blanket and pillow.

Aug 29th, 2013 6:13pm

http://p1.bikepics.com/2013/05/13/bikepics-2554992-full.jpg Living and trying to get out every day from the thinest glass cage,all dressed up in the heaviest steel ever...

Aug 29th, 2013 4:45pm

I think I remember who I am, but yet I am different now.

Aug 29th, 2013 2:26pm

being locked in a padded cell against your will, knowing what once was on the outside and trying to get back there, yet no amount of screaming or punching the walls is going to get you back, understood and accepted

Aug 29th, 2013 1:48pm

Like having Alzheimer's in reverse.

Aug 29th, 2013 1:45pm

the dots never connecting

Aug 24th, 2013 11:26am

Inexplicable to the world....Kerry

Aug 23rd, 2013 7:41pm

I have said this many times:Having a brain injury is like dropping a box of unmarked pieces of a puzzle ..then picking it up & having NO Idea on How, What, When and Why ..to even start placing them together to make any kind of sense out of it.Often it is not the trauma that creates the most pain..it is the lack of support & understanding after.~WRH

Aug 23rd, 2013 3:36pm

frustrating, invisibly misunderstood, daily struggle for basic survival, easily flooded brain leading to "can't think"

Aug 21st, 2013 11:15am

Like having the starter line come off the lawnmower, and you keep trying to re-wind it to start it up again. Only the lawnmower is your brain.

Aug 20th, 2013 9:29pm


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